Comments to the CDC/HRSA Advisory Committee's Ryan White CARE Act Reauthorization Workgroup

October 3, 2003

CDC/HRSA Advisory Committee on HIV and STD Prevention and Treatment
HRSA HIV/AIDS Bureau
Office of Policy and Program Development

Dr. Deborah Parham:

On behalf of the thousands of AIDS affected residents across Illinois, thank you for giving the AIDS Foundation of Chicago the opportunity to submit written testimony regarding reauthorization of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Founded by a group of dedicated community leaders in 1985, the AIDS Foundation of Chicago (AFC) is Illinois' principal advocate for people living with HIV/AIDS and the organizations that serve them. In addition to advocating for sound HIV public policy, AFC brings together service providers to develop systems of care and prevention that meet the needs of those living with HIV/AIDS. AFC is responsible for the administration, ongoing development, and evaluation of an HIV case-management system funded by multiple state and federal funding streams, including Titles I and II of the CARE Act. A national model of coordinated, centralized care, AFC's case management system encompasses a network of 52 agencies; employs 166 case managers to serve more than 6,000 men, women, and children living with HIV; and includes funding for direct emergency assistance, transportation, and short-term rental assistance. The AIDS Foundation of Chicago has also been funded since 1991 by the Illinois Department of Public Health (IDPH) to serve as the lead agency for the Cook County HIV Care Consortium established under Title II of the Ryan White CARE Act. In this capacity, AFC is responsible for allocating and managing funds for HIV/AIDS service delivery in Cook County, and subcontracting with 22 separate agencies. Services funded include primary medical care, case management, substance abuse treatment, mental health, childcare, food, legal services, and housing. In December of 2000, AFC was asked by IDPH to serve as lead agency for the Collar County HIV Care Consortium established under Title II of the Ryan White CARE Act. As lead agency, AFC is managing Title II funds for HIV/AIDS service delivery in the collar counties and subcontracting with 11 agencies.

The Ryan White CARE Act is the largest and most important source of funds for essential healthcare and social services for persons living with HIV/AIDS. In 2003, nearly $60 million of CARE Act funding supported a comprehensive system of care for low-income Illinoisans with HIV/AIDS. The system includes outpatient medical care, mental health services, dental care, food and nutrition services, AIDS medications, legal assistance, transportation, substance abuse treatment, case management, and other services. The CARE Act plays an integral role in Illinois' response to the growing HIV epidemic by identifying, developing, and coordinating care and services for some of the state's most vulnerable populations.

The demand for CARE Act services in Illinois has never been greater. An estimated 35,000 Illinoisans are living with HIV/AIDS, with approximately 1,600 new HIV infections occurring each year. Thanks to medical advances and supportive services available through CARE Act funding, the number of annual AIDS deaths in Illinois from 1991-2000 has decreased by 55%.

HIV/AIDS impacts all regions of Illinois. Approximately 85% of the HIV/AIDS cases are in the metropolitan Chicago area (Chicago and collar counties) while 15% are downstate. Although the City of Chicago continues to experience the highest numbers and concentration of cases, HIV and AIDS cases are growing rapidly in the surrounding suburban areas and across the state. For many Illinoisans in small and rural communities outside of Chicago, the CARE Act is their primary source for medical and social services.

While gay and bisexual men — especially men of color — continue to be disproportionately affected by HIV in Illinois and across the country, the numbers of infected women, injection drug users, and youth are increasing at startling rates. People of color now account for nearly two-thirds of recently diagnosed HIV cases in Illinois, while accounting for just over a quarter of the state's population. From 1993 to 1997, the proportion of female AIDS cases increased by more than 40%.

The CARE Act serves Illinoisans with limited economic resources. In the Chicago metropolitan area, nearly 93% of all clients served by the Ryan White CARE Act have annual incomes below $15,000. Outside the Chicago metropolitan area, 86% of CARE Act clients have annual incomes below this level. The Ryan White CARE Act has effectively improved the quality of life for many people living with HIV/AIDS by providing life-prolonging medications, primary care, and supportive services to thousands of individuals with no other means to obtain these services.

Program Strengths
1. Coordinated healthcare and support services — Coordinated healthcare and support services reduce dependence on costly inpatient and emergency room care and improve the health and well being of people living with HIV/AIDS. These services help individuals to address other issues and concerns in their lives that can lead to poor health outcomes. Policymakers ought to preserve access to BOTH state of the art medical care and treatments AND crucial supportive services in the reauthorized CARE Act.

Although medical breakthroughs and new antiretroviral treatments have accounted for decreased mortality due to AIDS in the last decade, HIV-infected individuals increasingly face myriad other concerns, including accessing substance abuse treatment, mental health services, affordable housing, and public benefits. In addition, stigma and isolation contribute to despair and depression, particularly for those people struggling to survive with HIV/AIDS outside metropolitan areas. Increasingly, support services such as case management, mental health services, food and nutritional services, housing, respite care, and substance abuse treatment contribute to the stability and well-being of people with HIV, and contribute significantly to their adherence to the medications and subsequent survival.

Multiple scientific studies among diverse populations, including published research conducted in Chicago, have proven the value of supportive services in increasing utilization of primary care services. A study of more than 2,600 patients of a Chicago clinic published in AIDS Care (2002) found that CARE Act-funded support services improved retention in primary care by 15-18% and made a substantial contribution to the improvement of patient adherence and HIV clinical outcomes.

Because HIV/AIDS is more than just a medical condition, the CARE Act must continue to address the social conditions that foster infection and create barriers to healthcare access. The reauthorized Act ought to continue funding for coordinated healthcare and support services that help individuals access and remain in systems of care; receive the maximum benefits of state-of-the-art medical therapies; and address co-morbid and social conditions, including poverty, substance abuse, homelessness, and other sexually transmitted and blood-borne diseases that affect an individual's ability to access and remain in care.

2. Eligibility — Illinois depends on CARE Act funding as a payer of last resort to provide medical and social services for HIV-positive people in need, regardless of income and immigration status. The reauthorized Act should continue to allow jurisdictions the flexibility and local control they need to serve its diverse HIV-positive populations in order to make the maximum amount of progress against the epidemic.

Most CARE Act services, with the exception of the AIDS Drug Assistance Program, limit eligibility requirements to increase their utilization and availability. This has reduced barriers to primary care and supportive services and allowed local communities to serve those individuals who need help the most. The reauthorized act must continue to provide jurisdictions maximum flexibility in order to promote positive health outcomes among populations highly impacted by HIV/AIDS.

3. Community planning — Mandated community-planning mechanisms ensure that Illinois' CARE Act funds are meeting the changing needs of diverse communities across the state. The input of people living with HIV/AIDS in community planning is especially valuable in insuring rational service strategies and priorities that are well received by members of affected communities. The reauthorized Act should retain community-planning provisions.

Through extensive investigation and evaluation, community planning in partnership with public health authorities allows CARE Act jurisdictions to apply funds in ways that best address existing community needs. With a broad range of communities impacted by HIV/AIDS across the state, local input and decision-making is helping Illinois maximize its scarce CARE Act resources. Community members, including consumers and providers, are best positioned to help determine gaps in services and the needs of local communities. Local planning processes also ensure that service priorities address emerging gaps and trends in the epidemic.

4. Title structure — The CARE Act's title structure, which benefits states, cities, and local communities, should be preserved.

The CARE Act's title structure allows for the development of systems of AIDS care in metropolitan areas highly affected by HIV/AIDS while also fostering the development of a broad range of AIDS services in all states, including those with a low incidence of HIV/AIDS. For states like Illinois that have large metropolitan areas as well as rural communities, the complementary funding available through the different CARE Act titles ensures the availability of a baseline of appropriate HIV/AIDS services statewide, while addressing the significant healthcare needs in heavily impacted cities.

The unique CARE Act structure allows people with HIV/AIDS to receive services from a multitude of providers-community-based agencies, AIDS service organizations, hospitals, and outpatient care networks-located in and representative of their own communities. Because stigma and discrimination are still significant barriers to accessing care for people with HIV/AIDS, the CARE Act serves a vital role in providing for care that is specialized, sensitive, and appropriate for individuals living with HIV/AIDS.

Program Challenges

The CARE Act is not adequately funded. At a time when there are more people living with HIV/AIDS than ever before, inadequate funding has made it challenging for CARE Act-funded agencies to meet the basic medical and support service needs of the tens of thousands of uninsured, underinsured, and low-income people with HIV/AIDS in the U.S. In addition, federal funding has not increased adequately to make up for the diminished levels of financial support previously available to AIDS organizations through local and state governments as well as the private philanthropic sector.

More people are living with HIV and needing services than ever before. Current funding levels have not kept pace with the growing numbers of people becoming HIV-positive and living longer due to advances in medical treatments for HIV. As healthcare coverage for workers becomes increasingly scarce and inadequate, a growing number of HIV-positive people are turning to the CARE Act for their essential medical and social services, creating further burden on the system.

Inadequately funded CARE Act requirements affect the system of care. Federal funding has not increased sufficiently to compensate for new administrative, programmatic, and planning requirements included in the 2000 reauthorization. For example, funded jurisdictions are required to assess needs among those living with HIV who are not in care and devise strategies to reach them, however, no new funding is available to serve additional clients. Other quality assurance and tracking requirements have proved expensive and burdensome to implement. In addition, the CARE Act is not sufficiently funded to respond to service needs that will be created by a new CDC initiative to identify, test, and link people who do not know they are HIV-positive with care and prevention services. As such, programs that already provide CARE Act-funded services at the lowest cost per unit of service are trying to serve more with less.

The CARE Act must support sophisticated medical tests and treatments. Due to inadequate and unreliable funding levels, the CARE Act does not make fully available the enormous advances that have been achieved in the field of HIV treatments. Across the country, over 15 states have closed ADAP enrollment to new clients or limited access to antiretroviral and other treatments. Due to matching state contributions, Illinois' ADAP has not needed to restrict enrollment or reduce the number of medications offered through the program. However, ADAP utilization has increased while state funding has remained level, and new restrictions may be a necessity in the future unless the program is supported with additional state and federal dollars. Many states also lack the funds to offer the newest diagnostic tests to their clients to measure medication resistance. Such laboratory screens can save money by helping clinicians identify the most effective therapies.

Suggested Program Changes

1. Congress should make the CARE Act a permanent program with eligibility guaranteed to all those who test HIV-positive and meet other service-specific requirements. Reauthorization was intended to update the CARE Act by ensuring that its structure adequately incorporates the tremendous advances made by science and technology while incorporating the evolving needs of people living with HIV/AIDS. Unfortunately, previous reauthorizations have resulted in Congress creating numerous program mandates that are largely unfunded and shuffled priorities that endanger the quality and continuity of medical and supportive services for vulnerable populations. Fluctuating and insufficient appropriations have resulted in varying standards of care across the country. Without an effective vaccine and cure, appropriate medical care, prevention, and supportive services are the only means of staving off enormous loss of life. Congress should swiftly reauthorize the CARE Act in 2005, maintaining its current structure and providing mechanisms to ensure its programs and priorities are adequately funded. In addition, Congress should explore ways to further institutionalize CARE Act programs as a federal priority.

2. The 2005 CARE Act should include adequate funding mechanisms to subcontractors for contract administration, program management, and quality assurance. In addition, the federal government should support subcontracts by providing enhanced guidelines and technical assistance on meeting program requirements and protecting sensitive client information. The 2000 CARE Act reauthorization established important benchmarks and criteria regarding program management, quality assurance, and service tracking. These mandates, while necessary and appropriate, create challenges for subcontractors due to lack of clear guidance around implementation and provider responsibility, insufficient funding to conduct the work, and minimal protections for consumer confidentiality. These obstacles thwart the intended goals and represent significant financial challenges for small community-based organizations that often spend more than they are reimbursed for on such administrative functions.

Again, thank you for the opportunity to comment on CARE Act reauthorization, which will significantly shape the nation's response to AIDS in the period to come.

Sincerely,

Mark Ishaug, Executive Director

Main CARE Act page